Rheumatologist visit. Went very well!

[susieq051]

Well Monday October 21 was my first visit with the Rheumatologist and director is not only caring but a wealth of knowledge. Answered every a question I had, never made fun of me treated me respect. Put me on 60 mgs of prednisone I get 6.5 hours of sleep after he told what to use. An allergy medication has a certain ingredient in it and most of his patients take this to sleep. I am only to take this for 7 days to off 4 days then back on. I was wired the first night emotions were running very high. Because of all the things he mentioned to me, made me very disillusioned with the doctors that were supposed to caring for me. I did not post this simply because even though I was sore out I was too emotional.

All the supplements he okayed but added one 81 mg of aspirin. Took me off of active in which my family doctor was not happy. Causes too many problems with blood calcium. This doctor set me up emergency visit with ophthalmologist my double vision. Even though I was taking 45 mg of prednisone I still could have gone blind. I have more energy now there is no fatigue. But my head seems clearer then it has ever been.

Sorry this so long I never met a more kinder as well as knowledgeable doctor. I also told him of this website and the truly kindhearted brilliant people who have this same problem and had I not found them I would have listen to my doctor and possibly gone blind. For all of you who not only answered me but this website itself is truly and invaluable tool in the survival and detection of this disease.

THANK YOU!!!

I am very Grateful for the wealth of information you have without hesitation, grateful to people who put aside their problems to help out someone else. I am still new to this problem so there will be no advise coming from me I lack too much information at this time. But believe me I will be asking a lot of questions. I know someone out will help me because all of you are not only caring you have experience in this disease of GCA and PMR. I now know I have both, Again I am grateful to my rheumatologist but all of You out there who helped.

THANK YOU!!!!!

[Mary63]

Lovely news! That doctor is a keeper!

[PMRpro Ambassador]

Good!

Just a question "Took me off of active in which my family doctor was not happy" - what do you mean? Alendronic acid or Adcal? Or something else.

[susieq051 in reply to PMRpro]

The doctor was not happy because according to him the acronym will protect my bones from osteoporosis. This rheumatologist states this is not always the case and make matters worse. Will have to ask how in next visit.

[DorsetLady PMRGCAuk volunteer in reply to susieq051]

He’s probably referring to Alendronic Acid then - and there’s no point taking it if you don’t need to. Did he suggest a DEXA scan to check your bone density?

Don’t think I sent this link before (apologies if I have ) but it might give you a bit more info -

healthunlocked.com/pmrgcauk...

[susieq051 in reply to DorsetLady]

Had a bone density scan for my bones prior to GCA one month before and showed my bones are in excellent shape

[DorsetLady PMRGCAuk volunteer in reply to susieq051]

In that case you don’t need AA - Rheumy right, GP wrong!

But you do need VitD/Calcium supplement (should be prescribed) - also take Vit K2 - helps the absorption of the calcium.

[piglette in reply to susieq051]

Did he mean to stop taking vitamin D and calcium though? You called it active?

[susieq051 in reply to piglette]

No he wants to continue on vitamin D and calcium but the actonel to prevent osteoporosis is not good for my body so he wanted discontinued. He was okay with all other supplements just not that medicine

[piglette in reply to susieq051]

Stopping the Actonel seems very sensible, goodness knows why you were on it in the first place.

[susieq051 in reply to susieq051]

Sometimes this little tablet does autocorrect and I sometimes do not read everything right way. My bad the medicine is actonel that is prescription to prevent bone loss. Sorry I did not make things clearer.

[PMRpro Ambassador in reply to susieq051]

Thanks - that is what I was asking! I wouldn't take Actonel either - risendronate is a bisphosphonate.

[Bridge31 in reply to susieq051]

I requested a Dexa from my Rheumy. Results were spine above average for my age, hips well within normal limits. He said “ I still want you to take AA. Hmmm, I can see from your face you don’t want to.“ I said “No I don’t.” He asked why and I said because I’ve read a lot of information about it. He said “Well don’t take it, it won’t make any difference to the condition of your bones !!!”

I said “ What about the Adcal ? “ He said “ Waste of time.“🤷‍♀️🤷‍♀️🤷‍♀️🙆🙆🙆

[Constance13 in reply to Bridge31]

I don't believe this!😟 "Take AA, but it won't make any difference"! What planet do these 'so called' experts live on?

[Bridge31 in reply to Constance13]

To be fair I think he actually said “Don’t take it then, I don’t believe it will make any difference to the condition of your bones in the long term. “

I think they have to cover their backs with advice to take it.

What about his opinion that the Adcal was a waste of time ?

[Constance13 in reply to Bridge31]

You have to laugh!😂😂😂

[PMRpro Ambassador in reply to Bridge31]

I don't agree - the reason for taking calcium when on pred is because pred makes you lose dietary calcium through the kidneys. Taking a supplement increases the likelihood of absorbing enough to keep the bones healthy - more fish in the sea so to speak. A study done years ago did find it made a difference for patients on pred - and it was fairly standard until Big Pharma came along with heavy marketing for Fosamax. I wouldn't take extra calcium if I weren't on pred and I am a bit hit and miss about it anyway. But my bone density had barely changed over a period of 7 years on pred.

[Heidi_SF in reply to PMRpro]

My doctor told me to take K2 100mcg with Calcium 600mg. Some Calcium supplements already contain K2, which is important for calcium absorption

[PMRpro Ambassador in reply to Heidi_SF]

Not where I live!!!!

[SheffieldJane]

So glad that you have two safe havens now. Do not respond to the fake energy - rest, rest rest. 🌸

[susieq051 in reply to SheffieldJane]

Sometimes it is easier said then done but believe I do test now when my body tells me to.

[Marijo1951]

I agree with you that this forum is invaluable. We all feel isolated when we are first diagnosed because most of us have never heard of these conditions - even though it's a relief to get a diagnosis and know that it isn't ''all in our heads''. I was diagnosed at 10 am on 31st July 2017, came home, took my first dose of pred, let my children, sisters and friends know what was wrong, had lunch, then Googled and found this forum at about 2 pm. The rheumy had given me some very useful booklets about GCA and PMR, but it's definitely joining the forum and finding others who can understand my situation that has helped me to stay sane and cope. We tend to look well on steroids and much of the terrible pain and stiffness is eradicated, so with the best will in the world, even those who care about us the most find it difficult to understand how ill we feel a lot of the time.

[susieq051]

So true this place is so valuable, cannot thank each and everyone enough for responded to questions and helping.

[susieq051]

I am going to have to start doing some more investigation on my own. For certain supplements because something I just need more investigation.